Rare Disease Day 2021 Today I’m joining with millions of people around the world in raising awareness for Rare Disease Day and #showyourrare. Last year I was diagnosed with Hypermobile Ehlers Danlos Syndrome also known as HEDS, a genetic, lifelong degenerative illness. That affects the collagen all throughout my body, causing issues with every system. …
Its hard not to feel angry when symptoms are ignored by medical professionals or recomended treatments create new problems and or take away more quality of life. If you don’t follow their treatment your seen as uncompliant. You need psychiatry to get over your “fear” of said treatment. But no one says anything when it …
I still can’t believe I finally get to share this, I had honestly given up all hope that I would ever get a diagnosis. But on the 21st of January 2020 at 11:00am I received my diagnosis! I have Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder that effects every system of my body …